This week starts chemo session 10 of 12. I’m anxious to be done, get new scans and possibly start radiation. I would love to tell you the type of radiation but I’m deep in the throes of “chemo brain” and anything more complicated than making myself tea with milk or lemon confuses me. I’ve actually made tea with both and It doesn’t taste too good.
I spend about two days prior to chemo getting my chemo bag ready. It seems all chemo patients have their own recipe for a proper chemo bag and I have my own recipe as well.
The first thing that goes into the bag is my laptop and phone. God forbid I’m without the ability to see who had a tuna sandwich on Facebook! The second is a very generous supply of salty carbs and an apple (as per Dr. Schmoopy), ice tea, ginger hard candies for nausea, cheese sticks which could survive the apocalypse and still be good and whatever else I find on the floor of my backseat that looks good. Lastly I have a small blanket to counter the cold feeling you get from chemo over the 6 or 7 hours that I’m there. I’m amazed at what I see coming out of others chemo bag. A large bag of produce, multiple water bottles, candy, potato chips, a fan, a queen size quilt, slippers and nail polish . These bags remind me of Mary Poppins bag. Mary Poppins was able to get her entire arm into her bag and pull out a floor lamp! I haven’t tried that yet but I’m not a big fan of floor lamps..
When you stop and think about the importance of a well stocked chemo bag and the effort that goes into preparing it, I believe it gives us a sense of control. Going through this journey, all the autonomy is essentially taken away from you. You have put yourself in the hands of others. If your anything like me and a control freak, this is no easy task. And so dear readers, the point of all this is: I obviously have no control over what drugs to take. I have no control over how long I will live. I have no control over the side effects despite the ginger, the pomegranate juice, the compote (thank you Grammy), the nausea meds or the pain meds. I have no control over the stress I am putting my family and my posse through. Preparing our chemo bags gives us back some brief sense of control.
My Sac de Ballet was a very pretty faux shiny patent leather bag with a ballerina on the front. The first day I got it I thought it was the most perfect bag anyone ever had. I had to decide what exactly was going into the bag besides my leotards and shoes. I really had nothing else to fill it with so I had to improvise to make it heavy and seem important. I decided a small portable radio, a picture of David Cassidy in a popsicle stick frame and Little House on the Prairie ( the entire series) books, and last but not least, a baloney and cheese sandwich on Wonder Bread . Just in case…
Today I thought I’d discuss Platelets..On my last blood work, my platelets dropped like a lead balloon . ( This is actually where Led Zeppelin got the idea for naming their group. The members of the band thought they were so terrible that they would sink like a lead balloon at their first concert) Anyhow, platelets are small blood components that help the clotting process by sticking to the lining of blood vessels. With a low count, you risk excessive bleeding and bruising. A simple cut could bleed endlessly. The techie name for this is thrombocytopenia.
A healthy person usually has a platelet count of 150,000 to 400,000. You have thrombocytopenia if your number falls under 150,000. My count was 29,000. This was of concern to my oncologist who wanted me to skip my chemo this week, but very worrisom to DR. Schmoopy who insisted I use plastic utensils in case I had an urge to cut off a finger or two…
After a couple of days, my platelets are back to normal at 171,000 and so I’m back at the Chemo Cafe. The point of todays lesson, besides allowing me to vent, is to stress the importance of donating platelets. Every 30 seconds someone in the U.S. needs platelets. And because platelets must be used within five days, new donors are needed every day. If you are interested in donating, which is not complicated at all, you can contact: redcrossblood.org
And so, I’m back to using regular utensils to eat. Truth be told, you haven’t lived until you’ve eaten spaghetti with a spork!!!!
In the past few months, I have come to learn all about balance’. As most cancer warriors can attest to, you walk a very very fine line with regards to your own mortality. The delicate balancing act of caustic meds, staying hydrated (the hardest for me) eating well or even eating at all which is so very hard for many must be carefully orchestrated. A dear fellow warrior has to figure out how to get their blood work to a place that will allow them surgery. Sodium, potassium, white blood cells, red blood cells – it goes on and on. If these numbers are not perfectly in place, it could delay a surgery. Again, a balancing act that anyone with cancer becomes fairly accustomed to though not always successfully .
I just finished my 8th round of Folfurinox. Click on the link to learn more about this form of chemotherapy. The side effects are cumulative so as the weeks go on, my balance’ becomes harder and harder to coordinate. I happen to have the worlds most adorable oncologist, Naim Nazha. A sweet teddy bear of a doctor who never forgets to give my cheek a squeeze when I leave the room. How this man manages to keep a cheerful demeanor all day is way beyond my comprehension. This is also a balance‘ . Seeing multiple patients in various stages of disease all day long, week after week and managing to give them a smile or a squeeze on the cheek is this doctor’s own form of balance’ .
I’ve come to notice we all have our own method of balance‘. Whether we are balancing our personal and business lives, our children schedules and non-stop chauffeuring, friends and family time or what should I do to today to stay hydrated and out of the ER?. We must all figure out the best way to accomplish this while maintaining our sanity. Not an easy task by any means, but certainly doable.
If you know anyone with cancer, who may need some additional emotional support, please suggest they contact gildasclubsouthjersey.org. As a long time volunteer, I can attest to the fact that emotional support is the cornerstone of balance’, and that balance’ is everything.
The term balance‘ is a rocking step. The weight is shifted from one foot to the other. (ba-lahn-SAY) (en tournant). This rocking motion is difficult to do successfully . It must be fluid and look natural or you look like a pendulum just going back and forth with no finesse. Practice your balance’ and see how your life can take to it easily and naturally.
I’m back at the Chemo Cafe for round 7 of 12. Today it’s usually quiet, except for the sound of pumps beeping and nurses explaining in very soft voices what drug their starting you wouldn’t know where you are. I should be comforted by this lull but in truth it reminds me how frail a chemo patient is. The slightest sniffle or scrape to the knee can upset the whole applecart. A simple infection most people shrug off can become life threatening to anyone with a compromised immune system. Usually chemo must then stop to treat the \infection and give the body time to regroup. Personally, I find the thought of stopping the chemo for a minor infection horrifying. The relationship I developed with my chemo, my hero, my savior, my reason for 22 days a month of hell is helping me to live to see important life events we all look forward to. Chemo is like a giant hug from an elderly Aunt who uses too much Jean Naté. You want the hug and the love that goes with it and hopefully some jewelry and a Chanel Bag down the road but holy cow!!! The smell is unbearable but we do it anyway.
You might have read in the news about a blood test to detect pancreatic cancer. These tests are currently in the clinical trial stage and researchers are hoping it will prove to be useful for other types of cancer. I’m thankful their are people who agree to be a part of any clinical trial, but very often the people involved in these trials are there due to the fact that conventional treatments have failed them. They are reaching out to find the one thing that will save them.
I recently had a heated debate with an asshat from Malaysia who sent me a message in Facebook peddling his “cure” for cancer with barley tea!! Imagine that!!! Barley tea will cure cancer, diabetes, pulmonary disease AND will whiten and brighten your teeth. All this in one lil measly tea bag for the groundbreaking price of $19.99 usd a box. I guarantee Ron Popiel is kicking himself right now. I won’t go into the gory details and prolific use of swear words only a girl from Queens can hurl, but Mr. Barley Tea won’t be bothering anyone else on Facebook. The number of people preying on you in a group support on Facebook is mind boggling. I’ve been petitioning Facebook to ban these people on the grounds they pick those who are the at their most vulnerable. People who are looking for anything that will cure them, may give this barley tea a try despite it being not FDA approved or approved by any cancer research group. I’ve had no success yet but I’m not giving up. I’m obnoxious that way…..
The Leotard The leotard as we now know it was popularized by the famous French acrobat Jules Leotard (1842-1870) who called the garment a ‘maillot’, a word meaning tight fitting garment. However, it is suggested that the leotard’s true origins lie a century earlier when body stockings were favored undergarments for the popular diaphanous Roman gowns of the time. It was not until 1886 that the garment came to be called a leotard, after Leotard himself. (Gymnastics.com). Putting on a leotard always felt like a hug to me. My parents were not from the touchy feely tribe and so a hug to me was always special, even if it came from a very unflattering garment. I always wore a black leotard. Frowned on by my dance teacher as morbid and not appropriate, I used the excuse we couldn’t afford the pink ones but truth be told, black was my thing even back then…
I thought since I have so much time at The Chemo Cafe on Mondays, about 7 hours of chemo, I would show you a few pictures of my perspective. The scene never changes so I could take new pics each week, but they would always be the same. It would be nice if the room color changed or the radio station was different. Tears for Fears is getting old. This is kind of like watching Ground Hogs Day
Playing “The Waiting Game” happens to us all. It seems like we are always waiting for something really important to happen. A graduation, a wedding, a baby, a new job, a biopsy or your waiting to find out what next adventure is in store for you with the oncologist. Will you have to continue chemotherapy for an unknown amount of time or will a new series of scans reveal what you have been waiting for or dreading. We are always playing a waiting game regardless of our current situation. I wonder if its possible to actually live without waiting for anything to happen? Is that what is referred to as “living in the moment”? (sorry my yoganista sisters, and you know who you are). Can we breath ourselves into a state of not waiting for a damn thing to happen? If so, sign me up!!! I promise to breathe mindfully every moment I have on the planet.
I have one more excursion to The Chemo Cafe next week. One more time to experience first hand how others are coping tethered to their personalized assassins . The multiple wreckers of cell walls. It seems young men are more stoic at The Cafe. They constantly look at their watch and then look at at how much is left to infuse. They have jobs and families depending on them to get that paycheck cancer be damned!! Older men are more leisurely, reading Car and Driver or Vogue. They don’t cover a bald head and don’t bring blankets or snacks, usually come alone and have fun with the very pretty nurses. Young women look shell shocked and angry. They are trying to keep it together with a stylish chemo supply bag consisting of infused fruit water, seaweed crackers, small containers of avocado slices, a very soft and pretty anthropologie blanket and a great Lululemon hat with a scarf. The phone is forever buzzing with texts, snapchats, phone calls and selfies of friends having fun without them but sending heart emojis. The older woman (me) have a certain look that’s hard to describe. Our jobs as moms, wives, caretakers , working woman has come to a screeching halt. Years spent doing doing doing for others stops. We are the walking wounded in mind and body. We bring lukewarm tea, broken crackers, sticky candies we found in the car, the throw off our beds to keep us warm. We don’t ask for help because it’s not our nature to need help. WE were the helpers. The more “mature” women at The Cafe have the look of a Queen in the throes of abdicating her thrown. “I was awesome once”. We were all awesome once yet here we are, grenades coursing through our veins hoping to be victorious.
Fifth Position in ballet is a position of the legs and feet where one foot is placed in front of the other, with the toes of the front foot aligned with the heel of the back foot. Fifth position is one of the more important positions as it is often a preparation and “in-between” position for many jumps, turns, adagio work and more. The position is with either the right or left foot in front, but it is technically the same position, just the difference of which foot is in front. “Preparation” is the key word here..
Today as I sit in the “Chemo Room” I thought I would give you a sweet lil lesson on the history of chemotherapy before the Benedryl kicks in and I start seeing tiny evil garden trolls running around giving out pizza and dry martinis…(true story).
According to cancer.org, during World War II, naval personnel who were exposed to mustard gas during military action were found to have toxic changes in the bone marrow cells that develop into blood cells.That drug was the predecessor of methotrexate, a cancer treatment drug used commonly today. I have treated with Methotrexate for a few years for rheumatoid arthritis and had no idea about the connection. The history goes back even further. In the early 1900s, the famous German chemist Paul Ehrlich set about developing drugs to treat infectious diseases. He was the one who coined the term “chemotherapy” and defined it as the use of chemicals to treat disease.
An Important name in modern chemotherapy is Sidney Farber, a pediatric pathologist. He is regarded as the father of modern chemotherapy, after whom the Dana–Farber Cancer Institute is named. Farber began raising funds for cancer research with the Variety Club of New England in 1947. Together they created The Jimmy Fund, which was one of the first nationwide fundraising efforts to take full advantage of modern media, such as a broadcast of the radio show Truth or Consequences on 22 May 1948. The success of the Jimmy Fund led Farber to realize the importance of marketing in the scientific advancement of knowledge about diseases.
I could drone on and on about this, but if your like me, you’ve already checked your phone twice while reading this. If you have been touched by cancer in any way and want to read more but don’t want science babel (Sorry Dr. Schmoopy) I recommend reading: The Emperor of All Maladies by Siddhartha Mukherjee. You will discover the significance of the crab on the cover later on in the book. Look for it at Goodreads.com or amazon.com .
I apologize for the brevity of this weeks read. I am still in the throes of severe fatigue which I’m hoping to level off at some point.
Today starts my “rest” week after 4 rounds of chemotherapy. Rest week is strange term for many chemo patients. The thought is, it gives your body a chance to recover from the previous onslaught of cytotoxin coursing throughout your body. When I was told about “rest week” I must admit, I pictured palm trees, waves and a gentle trade wind blowing through my oh so perfectly placed curls and “The Rock” serving me poke… The reality of “rest week” is anything but rest. You become a high strung race horse about to run on a very slippery track with 3 legs and a morbidly obese jockey on your back yelling at you in a language you failed in high school. Nothing makes sense. Side effects have no rhyme or reason and no descernable schedule. You wake up and feel pretty good only to have to sit down to brush your teeth. Feel good again but then food looks like it will sprout legs and a second set of teeth and run off the plate as you hightail it to the nearest bathroom. Feel good again but neuropathy keeps your hands and feet from working correctly. Rest week?
I understand the science behind the concept. Your body needs time to process the onslaught of various highly toxic fluids coursing around your body. No cell, good,bad or indifferent is safe from a slow and painful demise. They must all be Sacrificed for the Greater Good! If you’ve never watched the silent movie, Metropolis, I recommend it as you can get a good visual as to how chemotherapy works..
*Todays musings are unfortunately short due to fatigue and neuropathy..Next installment will make up for that…probably
Fourth position is considered an important position as it is integral to performing a pirouette correctly, to get the right “spin” I look at rest week like an out of control pirouette. You spin and spin and spin with no ability to stop the damage caused by it.
Mustering up the energy to write today is a monumental task. Imagine jumping into a pool with your laptop. You must balance yourself and attempt to open the lid. Balance the ‘puter and get your fingers to do as commanded. Only, your brain refuses to participate in this little experiment you have embarked on. Your fingers hit the keys blindly since you can not come up with a coherent thought or anything even remotely witty. Now don’t forget to balance yourself and watch out for the pool vacuum because it will suck up the cord..
This little excersize in futility is the result of chemotherapy induced neuropathy. One of many many side effects, this one is tangible. You can see it happen and are helpless to control it. The sensation of a cold glass of water in your hand or just taking anything out of the fridge becomes pins and needles, as is the feeling of it in your mouth and down your throat..This lasts about 5 days or so after the 5FU pump is disconnected. Other side effects are severe fatigue. Putting toothpaste on your toothbrush is similar in reaching K2 without any gear what so ever in flip flops and torn LuLaRoe leggings…It’s running through water without the aerobic benefits. Your out of breathe, sweating profusely and your legs feel like they are about to collapse. Fear not dear readers, I put up with this in the name of good dental hygiene and it makes my adorable dentist very happy…
Overheard in The Chemo Room last week: ” I know what your going through, my Aunt’s cousin’s brother’s nephew is going through the same thing” . “All my relatives over the age of 55 have died of cancer” “I’ll pray for you” Oh boy, that really is a touchy subject..Seems like the consensus that day in The Chemo Room was, ” Thanks, but praying doesn’t seem to be working for me”. My personal suggestion is to be careful about advising someone it’s all going to be ok. Sometimes it’s just not. If you truly want to be helpful, just be available. Don’t ask, just do.
Third position is very rarely done, though it still has a spot as one of the five basic ballet positions. The reason it is not commonly used beyond a beginner level is that a third position can very easily look like a misplaced first or fifth position. This is an awkward position for your feet. Hard to hold and rarely used. This past week was my Third Position. I had a hard time holding on and I felt awkward and unbalanced.
Today starts another chemo week. I must admit, the night before is incredibly anxiety provoking . Starting around 8PM my mind goes into hyper drive. The pre chemo blood work on my very slippery veins sets the tone for the rest of the day.
The actually “hooking up” is similar to the Spacestation docking..An enormous amount of prep work by the lovely nurses at Dr. Nazha’s (my oncoligist) office. The skin is cleaned no less then 4 times and a freezing spray is used to soften the blow and then the lovely nurses pierce the skin with the needle into the center of the port to start the meds. All this is done by touch because the port is under the skin. I have a habit of pressing my nails into my palms to distract me because I read an article in the dentists office that said your brain can only comprehend pain at one spot at a time. I don’t know if this is actually true because it was in an Oprah magazine and everyone knows Oprah knows absolutely everything!
And so, here I am. Chatted with two friends, one on chemo and one not. We spent some time talking about our kiddos and very little time on ourselves. Typical moms are we..